Not chronic pancreatits...then what could it be?

I am at my wits end which is why I now ask you about what my husband's illness might be. Other doctors have not been able to find out and seem to have given up a long time ago.

My husband is 31 years old. He has been living healthy always and never had any drinking nor drug problems. He actually drinks less than most.

Ever since I met him he has had severe back/internal pains coming and going. Either he feels they are in his back or inside his chest/ribcage - not stomach. The pain comes and goes, sometimes he's fine for weeks, other times he has medium pain for days/weeks, other times his pain is so severe that all he can do is lying on the floor in so much pain. He has specific was of sitting and lying, to relief the pain slightly.

He also has issues with his stomach. He tends to get an upset stomach easily and sometimes bleeds when going to the toilet.

In late 2010 he had such a severe attack of internal chest pain/back pain that he collapsed and started throwing up. He was rushed to hospital in an ambulance. In the trauma centre, he kept throwing up due to the extreme pain. The doctors ran many tests and found out that his blood sugar level was very high. They also found out that he had very severe acute pancreatitis. Additionally as they scanned him, they found he had a cyst on his pancreas.

He was in hospital for a couple of weeks and got better gradually. Doctors established that he had acute pancreatitis and secondary diabetes. The cyst was drained. As my husband has had pain for years and we found out that pancreatic cysts coupled with secondary diabetes (doctors established that he has had secondary diabetes for years without knowing) are symptoms of chronic pancreatitis, we thought he had, had chronic pancreatitis for years.

The doctors were very confused about why he had pancreatitis as nor acute nor chronic made much sense - my husband as mentioned does not drink, didn't take any medication, other than imodium (immodium) sometimes and he had not been partying more than usual before being hospitalized. Doctors best guess was that it might be a result of malaria pills, but they said that it was only a guess.

After being discharged, he started seeing a doctor who specializes in pancreatitis, regularly. My husband's cyst filled up again and was then removed by surgery. He started on insulin which went well. He continued having severe pain coming and going as usual. After seeing this doctor for a while, it was established that my husband does not have chronic pancreatitis. That it was only acute pancreatitis he had, had. Doctors had no answer for why he then had all the symptoms of chronic pancreatitis. His inflammation levels were now normal even though he continued having pain.

End of last year he was admitted to hospital again. His pain was very bad, but the 'normal' version of severe pain - not as extreme as when he first was admitted. However, his doctor felt this episode of severe pain had persisted for too long.

Many tests were run in hospital. They had no idea why he had the pain nor why he has all these long-term symptoms. He still did not have pancreatitis - inflammation levels were non-existent. He was scanned and told the only thing looking abnormal was that his pancreas looked 'bulky', but doctors didn't see that as a problem and made no further investigation as to why it's 'bulky'.

He was sent home after a few days. He saw on the note they had given him when discharging him, that they had written he had been admitted to hospital due to gastritis. No one had told him this. The doctors had told him they didn't know what was wrong. So to us it seems that they just wrote 'gastritis' on his discharge note, to write something.

Everything has continued as normally, he still get bad pains coming and going, lasting for days at a time, sometimes weeks. His secondary diabetes has by no means improved and he is still on insulin. We have been told his diabetes is permanent.

He was recently scanned again. Doctors found that he now has a new pancreatic cyst in a different place than the other one.

We have no idea what is wrong with him, but I'm very scared it might be something serious. But probably something rare - otherwise I imagine doctors should have found out by now - now they have given up.

But what could it be when it's not chronic pancreatits, but that the acute pancreatitis was a one-off (I'm starting to think that maybe the acute pancreatitis was actually a symptom of whatever it is that he has)? Secondary diabetes, pancreatic cysts, 'bulky' pancreas, acute pancreatitis, severe back pains/inside his ribcage coming and going, running stomach quite often...what could this be symptoms of? Had he had cancer, I'm sure they would have found out long ago.

I don't know if this will be helpful or not, but I saw a "Mystery Diagnosis" show with a woman who had mysterious attacks of abdominal pain and several doctors couldn't figure out what it was. She eventually found a GI doc who found she had a malfunctioning duct that transports enzymes and bile from the pancreas and gallbladder into the small intestine. It would get blocked and the pancreas would get backed up, causing severe pain. In some people, a gallstone stuck in the biliary tree can cause it. In the woman on the TV show, I believe it was caused by the muscle that controls the valve. It was too tight and spasming. She had surgery to loosen that muscle and the pain stopped.

This page describes it a little.
http://en.wikipedia.org/wiki/Sphincter_of_Oddi_dysfunction

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